Dexcom mandatory data sharing with Clarity

Diabetes Technology Glucose Monitoring
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Not be too critical, but this has been bugging me for a while now.

I know this goes against the trend of data analytics that consumes every bit of our online activity, but it grates me that Dex’s display/analysis software (Clarity) cannot be used without sharing all your data with them for their own purposes. Here’s their privacy policy: http://www.dexcom.com/linked/documentservice/PrivacyPolicy

Dexcom will use all your data that you’ve uploaded to their system (for example, for use with Clarity) for their own research and marketing. You paid them handsomely for their product, but they do not pay you for taking and using your health information (even if they “de-identify” you from the data). They will share the de-identified data with their business and marketing partners. Most importantly, you cannot opt out of this if you use Clarity. Maybe this helps to develop a better future product, but it’s also all about monetizing user information without your express permission and without compensating you.
I know, I know, welcome to the world…

So if your endo requests or even requires that you share your Dex CGM data, you cannot do so without also sharing your data with Dexcom. I’m not a Luddite, but I’m sorry, I think it’s lame there’s no ability to opt out.

Other annoying features of Dex’s so-called privacy policy: they do not recognize or honor any “do not track” options you may have selected for your web browser. I find this especially obnoxious for a health services company. And if you cancel your Dex online account you have to specifically and separately ask them to remove the account Personal Information or else they will continue to use it for their analytics and marketing. Like anybody who cancels their account ever thinks that doesn’t actually remove their Personal Information from the system.

You have to specifically and separately opt-out if you do not want to be included in their direct and third-party marketing, targeted to you based on your Personal Information. That’s something you have to read about on your own and email them about; they don’t ask you.

If you’ve read my previous comments you know I’m a big fan of CGM technology, but I find it troubling that if I want to get all the data from my Dex receiver I MUST allow them to vacuum all my data, without explicit consent, without opt-out ability, and without providing an alternative tool that would allow me to upload the data to my own computer for analysis with my own tools.

Okay, end of rant. Maybe someone can inform me why these concerns are misguided.

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Let me start by saying that, in general, I believe that my data is my data, whether it be my credit report file or my medical records. I do make an exception in the case of Dexcom because they have helped me in immeasurable ways.

When I started using the Dexcom CGM in 2009, my A1c dropped by almost a full percent. I count Dexcom’s CGM as one of the five or six most significant reasons for my ability to control my blood glucose level. Their production of sensors that last well beyond their 7-day wear warranty really pleases me and makes me feel like this company truly supports my fight with diabetes. Their customer service is excellent and they will often replace a sensor if I hit a blood vessel or a particularly painful spot. These situations tell me that Dexcom is more than willing to give me the benefit of doubt.

As to Dexcom Clarity, I find the 14-day standard day report to be the single best tool to inform me how to respond to the dynamic of diabetes. I have no problem with Dexcom using my de-identified data to help improve their technology going forward. I am generally very skeptical of the intentions of most corporations but I think Dexcom has done a great job earning my support. If they need my de-identified data to help me and them, then I am sympathetic with that program.

Where I agree with you completely is that Dexcom should be more transparent with this data sharing. I think they can make a persuasive case to most of us to do as they are with our data. I suspect that my position on this resonates with most people who use their system. I consider this data sharing as a way that I can contribute to improving this critical feature of the artificial pancreas tech as it matures into a highly beneficial tool for people like us.

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The Dexcom CGM is the best thing that ever happened since my daughter’s diagnosis. I no longer set an alarm multiple times during the night in order to check my daughter’s BG. Instead, I set tight overnight parameters and let the Share alarm on my iPhone wake me when my daughter goes high or low. Don’t even get me started on the peace of mind the Dexcom affords me while I’m away from my daughter. I am so grateful for this amazing piece of technology that Dexcom can have all the BG data they please, especially if it will help further improve the technology and/or help others. (What else could Dexcom possibly do with the data, sell it to Russian spys?) Heck, they can monitor my telephone conversations if they want; I’m that grateful.

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What harm would my de-identified information cause me? I’ve provide some de-identified info below. (Calling all conspiracy theorists) Dexcom has helped me so much that I guess I’m not too concerned. Granted I’m not using the Dexcom receiver anymore. I opted for xdrip for Android. I imagine I should see how xdrip is using my data. Don’t recall a privacy statement there.

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I’m probably too cynical, but I can’t help but think this was a design accident rather than a feature meant to help people with diabetes, and is something that they will probably fix in their next generation of sensors, just like they’ve done for their current G5 transmitters.

I’m with those who don’t really care who has my de-identified BG data. Having said that, I know that some people are deeply concerned, and I do think having an opt-out or alternative should be available.

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